Hi there! I'm looking for some guidance regarding a diagnosis and referral to a rheumatologist. I have been having lots of wrist and hand pains on both sides for over a year now which, coupled with other symptoms led me to believe I had RA. I have been experiencing a lot of stiffness in both hands and am finding it increasingly difficult to undertake tasks that require a lot of dexterity such as using a pen and even using the hoover end is particularly painful. (I am 44 year old male). However, my bloods have come back normal (rheumatoid factor and Anti Cyclic and full bloods). I really cannot understand how there is no sign of inflammation in my bloods, because my hands feel really swollen, bruised and very stiff and have been for several months now. I also have several other symptoms such as persistent dry mouth which drives me crazy, pain in my feet/some toes and, not least feeling about 80 especially after waking up. (In all seriousness, I do feel like an old man and get tired all the time). My GP arranged X rays on my hands and wrists and they came back showing 'osteophytes in both distal radial ulnar joints (wrists) and also osteophytes in the first left metacarpal joint and erosion at the proximal phalanx which are in keeping with early onset degenerative changes' (quote from test results). However, the hands are very stiff ALL over and not just at these specific spots but I may not have made this clear enough to my GP.. See video here of my trying to touch my fingers with my thumbs as quickly as I can drive.google.com/file/d/0B-...
Despite the negative bloods, I still believe I might have RA because I understand that the bloods can indeed come back negative in the early stages. However, my GP has put the problems down to wear and tear. I don't want to seem like a hypochondriac, but I don't think this level of prolonged stiffness pain and swelling is just wear and tear.. Does anyone else agree or disagree? Can anyone advise me where do I go from here given the negative bloods? I think I should be referred to see a rheumatologist, but my GP said the bloods would definitely show the RA which they haven't so presumably my GP will probably not agree to this referral. Can you give me any feedback from the video?
This is the video link again of me trying to quickly touch my fingers. (This is as fast as I can go) drive.google.com/file/d/0B-...
There are >100 varieties of inflammatory arthritis.
As you know, it is possible to have seronegative RA that converts over time into seropositive RA. It is possible to have seronegative RA.
There are varieties of seronegative inflammatory arthritis where being seronegative for RA-specific factors can be a strong pointer to the diagnosis. E.g., PsA - psoriatic arthritis. This occurs in 20% with a history of psoriasis. It can occur in people with late-onset, relatively mild and small coverage psoriasis. It can occur years in advance of the manifestations of skin psoriasis. [ETA: I'm currently being assessed for PsA presenting most inconveniently in my hands with possible sites elsewhere. A differential diagnosis is erosive osteoarthritis which is typically located in the hands and is inflammatory despite being osteoarthritis.]
You need to ask for a referral to be assessed for a seronegative inflammatory arthritis. Access to this varies from one CCG to another but you may live in an area where your GP can request a referral specifically for this. If it should come to it, could you afford a referral to a private rheumatologist and take along a copy of your blood work results and imaging report?
When it's next open, phone the NRAS Helpline and talk through your situation with them as they may well have useful guidance. Freephone Helpline: 0800 298 7650
Thank you so much for that information; I was not aware it was possible to ask for a seronegative assessment! With regards to psoriatic arthritis,I do have a chronic skin disorder and briefly considered psoriatic arthritis too, but it was diagnosed as dermatitis rather than psoriasis since it mostly affects the face and scalp. I do hope your assessment goes well for that. I have had severe dry mouth for about 2 years now and am also on eye drops for dry eyes, but the test for that came back negative (for Sjogren's disorder). I will certainly consider other types of arthritis that you mentioned and will ring the NRAS. Thanks again
Just to say that when I showed my GP the 'thing' in my hairline, he said, "Dermatitis" - when it was shown to the consultant recently (who has an especial interest in PsA, she said, straightaway, "Plaque psoriasis"). Likewise, I have some squiffy toenails that are ?fungal/psoriatic nails.
These things all look like each other - and it's eyewateringly difficult to differentiate them, not just for lay people, but looking at the clinical literature there seem to be huge areas of overlap. If you look around this board, you'll see it's quite common for people to have a diagnosis changed several times.
That is VERY helpful. I was not aware that the two conditions could be confused so easily. I am on strong anti fungal meds to try and keep the facial rash away and like you, have one or two fungal nail infections. I had to redo the ENA bloods 3 times for some reason as they kept coming back as incorrect samples. My GP is more concerned with my kidney levels though, since the eGFR was low (55), and he has asked for those to be tested again. I will pay for a private rheumy consultation because it might save my poor hands deteriorating further.
Depending on where you are, it can be £200-£250 for an initial consultation. However, if it helps to sort your life out then your GP can write a referral letter for you.
Hiya Richard. With all your symptoms & imaging I would agree, push to be referred to a Rheumatologist even if it means seeing another GP in your Practice. X-rays don't always show inflammation, ultrasound however does. Whilst osteophytes can be a common symptom of Osteoarthritis they can in rarer cases be a symptom of Rheumatoid Disease (RA & associated autoimmune diseases). You're correct in that there are both seronegative & seropositive forms & without blinding you with science your other symptoms are indicative of RD, morning stiffness (it commonly lasts an hour, sometimes longer in the unmedicated), symmetry of joint involvement, fatigue (feeling about 80 is a good description), also feeling flu like, is that how you'd describe your overall feeling?
You say there's no sign of inflammation in your bloods, were you given the results of your ESR & CRP (Erythrocyte Sedimentation Rate or longer term inflammation & C-Reactive Protein or acute inflammation)? These also form part of a possible RD diagnosis so are an important piece of the jigsaw.
Assuming you're not prescribed or taking over the counter meds which could cause a dry mouth that could be related to Sjögren's Syndrome, another autoimmune disease. They can come in pairs or more. Are your eyes also dry?
Early onset degenerative changes is what your GP should be referring you on. The earlier symptoms are acknowledged & treated appropriately the better the prognosis, whether it's OA or RD. Were you prescribed anything? Even if he suspects OA you should at least have been prescribed an NSAID, after all the results show degenerative changes in your hands & wrists & only inflammation can cause that so it must be there somewhere!
I have both RD & OA & can say that both are painful, both affect the hands & feet & so really only a Rheumy can determine if you have either, or both. His expertise through examination should tell him just what you have, so keep pushing. GP's whilst they have general knowledge, they're General Practitioners, don't necessarily know all the signs to look for unless they have a Special Interest in Rheumatology, whereas a Rheumy does.
Good luck & if there's anything else you think we might be able to help with you only need to ask.
Thank you!! I'm so glad you agree that a referral is needed and I'm not going mad regarding the inflammation! like you said, it has to be there somewhere! Did you manage to see the video by clicking on my drive link? Your comments regarding the osteophytes are helpful... My GP just gave me an anti inflammatory gel because I have a history of gastric problems which would be exacerbated with antiinflammatories (so that's a bit of a worry ;-s)
I'll check my blood test results when I get back home and see exactly what was tested and write a fuller reply later when I have those details, (I have an online medical record which is extremely helpful).
Yes, most mornings are very difficult because of the pain but I feel guilty resting without a diagnosis. My joints complain like I've climbed a mountain the day before, yet I've done nothing to warrant the pain. Just minimal overuse will cause my joints to really complain. I cannot imagine how bad it must be having two arthritic diseases, I really hope things ease up for you soon
Forgot to say, I've been on dry eye drops for about 18 months now. Even now, typing on my phone is causing pain shooting through my finger tips which is in addition to the usual deep ache in my wrists :-s
I just asked my rheumatologist at my first appointment why some of my tests were borderline/negative.
He told me that RA was a clinical diagnosis and that even if all my blood work was negative, he still would have diagnosed me with RA that day. He said the blood work is only a tool, for the clinical diagnosis. (I did have positive tests but my RA factor was negative - sero+ though, ANA+, and inflammation+).
Push for that referral! I had to jump up and down because last year my blood work was negative (although no one ran the sero test, which is annoying as hell considering I was at the doctors office every other week for a year!).
When I told my GP that I was basically not leaving until I had my rheumatologist referral, that SOMETHING was wrong. He did say "ok" and said it was probably a good idea. He said as doctors they like to put things in boxes. He has a certain amount of boxes but the rheumatologist has more boxes then he has, which makes absolute sense. So just because you don't fit into one of the GP's boxes, doesn't mean a specialist won't be able to find the right box!
Hi Richard, I was compelled to reply to your post as I've been in the same boat for almost 2 years. My rheumy refused to investigate whether I have seronegative RA, I was unhappy with this , I ended up meeting with the head of rheumatology at my hospital, a great guy who diagnosed me with Palindromic Rheumatism/ palindromic arthritis, this is exactly like RA and will most likely develop into RA. The only difference is it doesn't damage the joints at this point it's only inflammation. If you have had X-rays and ultrasounds come back positive aswell, you may possibly have PR. the treatment is the same, methotrexate, DMARDs, NSAIDs and biologics. It's taken me a long time to accept that I have a disease that may turn into full blown RA but it is being treated and I no longer deny I have palindromic rheumatism. It's a difficult process getting someone to trust you when your resets are negative, I often felt they looked at me like I was looking for some strong painkillers, like I was looking for drugs but I refused narcotics which puzzled them. (I only like my NSAIDs for pain). It wasn't until I brought in hundreds of photos I took on my phone of my raynauds, red swollen joints or swollen tendons from the swollen joints. Photos are extremely important in diagnosing PR, without them seeing the actual flare up they cannot diagnose. Best of luck, I really hope you get this sorted and it doesn't take anything from you. Stay strong!
Apologies for not having responded sooner, my puppy has bitten through my internet cable but I didn't realise his teeth were the cause of my loss of internet! Thanks so much for your post. Yes, I know what you mean about that suspicious look; its unfair and unpleasant. My hand and wrist xrays show degenerative changes which causes deep pain, but I believe, like you, the inflammation is causing most of the stiffness and loss of mobility. Thank you for advising me of this similar disorder. Sometimes things aren't strictly just black or white as the blood tests would have us believe are they?
Stay positive and don't suffer in pain; get the pain killers down you By the way, TENS machines are very helpful for pain relief.
1. Ask your GP to send a toenail sample to the lab for analysis. It's simple: they just take nail clippings. That may decide between psoriasis and fungus
2. Get a dermatologist to look at your skin issues. That's where I might pay to go private: if the derm says it's psoriasis, it looks like a slam dunk case of PsA to me. OTOH, if you see a rheum privately, they will most likely want a derm consult first to diagnose your skin before they will diagnose your joint problems.
Please keep us informed of what's happening! All the best to you.
yr symptoms v like mine, hands freeze on steering wheel etc etc; had this for yrs b4 other stuff triggered RA +ve - but close friend is much worse and now diagnosed -ve RA by same rheumatologist. if gp won't refer you on request then go privately for an initial assessment if u can manage to. then they'll put u in state system - that's common now. good luck Richard
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1st Rheumy Consult done
Saw consultant today
The continuing debate about CRP and ESR, my experience...so far.
Not sure if I have RA
New to this....
